Category Archives: Leukemia

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During our PALS visits at the university last week, Jelly became quite tired early on, as she often does. Despite the chaos all around her–other dogs, exam-fearing students–she lay down and fell asleep. I apologized to the student petting her at the time, telling her that Jelly often finds the visits exhausting. The student responded, “Maybe she’s an introvert.” Kids these days. They’re so smart.

I’d never really thought of Jelly as an introvert before, which is odd because I am one myself. Introverts like their alone time. They may also enjoy being with others, but they can find social interaction draining. Extraverts, on the other hand, are energized by spending time with others. They leave the party wound up rather than needing a nap. Most of us are ambiverts, falling somewhere in the middle.

Sometimes I compare myself to my extraverted friend, Ms. Bubbly (it’s Dr. Bubbly to you, but Ms. has a nicer ring to it), who is at the other end of the spectrum from me. She’s constantly running from one social event to another. I don’t know how she does it.

Ms. B always invites me to the frequent large social gatherings she holds at her home. She understands when I politely decline each and every time. She knows I’ve always found such get togethers overwhelming.

Later this month, Ms. B will be hosting her annual Hanukah party, which I have already declined. I need to save my limited social energy for two engagements we’d previously scheduled for the nights following. This means I will not get to eat any of the 12 dozen latkes she has ordered for the occasion. (You read that right: 12 dozen. She has a lot of friends.) The authentic latkes alone spur my motivation to go, but my introversion still won out. That and the potential for bruising from having to battle the crowds to get to the latkes.

Ms. B and I often go for coffee after Sunday yoga, a sign that introverts do not avoid all social interaction. They may prefer more intimate gatherings, and they enjoy solo time to regroup occasionally. When we go out, Ms. B and I have lovely visits during which we catch up on each other’s lives. I relish this one-on-one time.

I can manage small groups, so long as I don’t overdo it. Two major social engagements last weekend necessitated a day on the couch. My introversion long predated my leukemia, so I can’t blame my health. If I hang out with you, whether alone or with others, and my eyes start glossing over after a time, please trust it’s not you, it’s me.

Now that I think about it, I realize that Jelly hasn’t fallen far from this introverted tree. She prefers small groups of dogs, cowering in the bushes when larger packs approach. She, like me, assesses any situation fully before jumping in with four paws. And just as I enjoy my alone time, she is fine to amble the off-leash park on her own, stopping to greet only the most fragrant of dogs. When she is overwhelmed by a group, she does exactly what I do: she avoids the situation altogether, or she lies down and takes a nap. Like mother, like daughter.

Curiously, over the past week, I decided to focus on my vacation rather than writing my blog. Sorry to leave you hanging, but I’ve been busy showing Grover the sights in this glorious country.

Several friends expressed concern when I mentioned I was going to Israel. “Is it safe there?” they asked. “Aren’t you worried about terrorists?” “Not at all,” I said. I lived here previously during a time of high conflict, so I know how safe Israel actually is. The highly skilled armed forces ensure that citizens are protected from harm. Security is ever present.

Unlike in Canada, Israeli men and women are conscripted at age 18, barring circumstances such as a physical or psychological impairment, a criminal record, or religious observance. There is a significant military presence all over the country, and a much higher level of vigilance than in Canada. There needs to be.

Israelis may be safe because of the measures in place to protect them, but tourists are another matter. I quickly learned that I am taking my life in my hands by crossing the street here. The drivers here are insane. That whole notion of passing on the left is foreign in this foreign country. Those using the smallest vehicles are the worst. Imagine a motorised scooter (I’m talking about the two-wheeled, push-off-with-one-foot variety that children take to school) or a motorised skateboard overtaking a bus from either side at high speed. And why wear a helmet when you could risk your life? I am grateful to not have seen any of these daredevils thrown from their vehicles. The result would be ugly.

I have learned to cross the street with caution, and so far have not been hit by any moving objects. There have been several close calls, however. I feel like I am in considerably more danger crossing the street in Israel than I was in the UK, where I never quite mastered the direction of oncoming traffic.

The sidewalks are just as or even more dangerous than the streets. Forget the distracted walkers glued to their telephones; those imbeciles are wreaking havoc on sidewalks world wide. Not only are two-wheeled vehicles taking over the roads here, they expect me to share my sidewalk space with them. Israeli sidewalks are flooded with any fast-moving vehicle that needs to circumvent a traffic jam (I use the word “need” loosely here). Patience may not be a virtue of our people after all. Considering how much walking J. and I have done over our first week here, I can’t believe that I am still intact. I’ve long insisted leukemia would not be the death of me, haven’t I?

We have five days left here, assuming we survive. We have seen so much of the country already and have so much more to explore. I am so glad we came to this marvellous place. I promise you will have an experience like no other if you vacation here. Make sure you bring sunscreen, good walking shoes, a bathing suit for the Dead Sea, and your helmet. Even if the two-wheeled-vehicle risk-takers don’t wear them, you still could don one as you’re walking. The Israelis will keep you safe from terrorists; it’s up to you to keep yourself safe from their vehicular shenanigans.

Have I ever defined the post-Bar Mitzvah (Bat Mitzvah, in my case) blues? When someone gears up for something for so long, and it’s fantastic, but then it’s over? That’s what today feels like for me.

After months of anticipating yesterday’s Light the Night Walk in downtown Calgary on a beautiful fall evening, it’s over. My special support team walked the full five kilometres with me–a kilometre for every year–to celebrate my enduring good health. The evening was perfect.

I’ve described the walk before but allow me a medically inaccurate and absurd analogy. Imagine each walker as a blood cell. There are the white blood cells, the largest in size but fewest in number. Those are the leukemia (and other bloody disordered) survivors holding our little white lanterns. Then there are the red blood cells, which are smaller but more plentiful than the white cells. The red-lanterners are those walking in support of the white lanterners.

Platelets are small fragments of blood cells. They are represented by the gold lantern holders, who are survivors in their own way, walking in memory of someone who has died. They may feel they’ve lost a part of themselves.

Finally, let’s not forget the plasma, which carries nutrients, hormones, and proteins through the body. Consider the plasma all the amazing volunteers who registered all the walkers, distributed t-shirts and lanterns and coffee and hotdogs, and lined the pathway cheering us on.

We of many lanterns walked along a narrow pathway, clustered together but hopefully not clotting. We white lanterns were surrounded by our devoted red-lanterned supporters. One group followed after another, each its own community of red-lanterened support for one little white lantern. The gold-lanterned folks formed their own groups or were sprinkled amongst the whites and reds (we had two golds on our team) because blood disorders touch too many people. Along this narrow pathway–an artery? a vein?–walked all these blood cells, supporting one another, guided by our plasma support staff.

At moments during the walk, I looked around me and saw my little group, distinguished by their absurd team attire–perhaps next year you too could look sharp in a multicoloured Dr. Seuss hat–and I realized how not alone I am. While I searched for my own team, I saw so many similar groups ahead of and behind me, reminding me that we’re all in this together.

I’m blessed by the people who walked with me and the people who sent their regrets and wished me well. To the team members who hunted down my ridiculous 5-year pin, which I finally received from a kind volunteer, a 5-year survivor himself. To the two very handsome firefighters, the retired one who appeared on site unexpectedly with his beloved partner, the other one in uniform who handed me my survivor’s rose at the end.

Today I am spent, drained, hungover, but in a good way. You must know this feeling. I look forward to next year’s event. If you too aspire to be a red blood cell in colourful clown attire, know there’s always next year.

We leave on our big vacation in 12 sleeps. When we were first planning this vacation, J. told me her rush of fall weddings would end immediately following Thanksgiving. We could be on the plane already, except I didn’t want to miss the annual leukemia walk. Which would you choose, a trip to Israel or a leukemia walk? Don’t answer that.

This decision to delay the vacation may not make sense to you; I’m a little bewildered by it myself. Going on this annual walk, hanging out with my fellow leukemics, wearing my guest-of-honour SURVIVOR t-shirt, has become a significant event in my year. I’ll try to explain.

My definition of a milestone has changed over my five years with leukemia. After I became so sick, I was proud of being able to walk unassisted and to tie my shoes without falling over. I vividly recall my first post-diagnosis yoga class, which I survived despite falling over a few times. I remember cooking my first real dinner post diagnosis, and seeing my first client. Being alert enough to drive again was another milestone.

As time passes, the goals have shifted. There’s the annual Cancer Centre’s Christmas gift-basket draw, which means I’m alive to lose my money again for a good cause. I don’t hate my birthday anymore, and the importance of cancerversaries is self-explanatory. For whatever reason, this leukemia walk has taken on an odd significance in my annual calendar. It’s my prize for getting leukemia and not dying from it.

This year’s will be all the more special because I will finally receive my 5-year pin. Now you know the real reason I delayed my vacation: I wanted a silly little commemorative pin. Frankly, I could have lied about how many years I’d had the illness and received this pin anytime–no one asks for a doctor’s letter–but I’m too honest for such deception.

This coveted pin is nothing to speak of. It’s the shape and colour of a drop of blood with a 5 on it. The blood-drop symbol is almost identical to that used by Canadian Blood Services. When I wear my pin proudly, people may well assume I am a blood donor (I selfishly only take blood), and not a leukemia survivor.

Does it matter that the pin will have meaning only to me? Of course not. If anyone asks, I can always set them straight. (Ha ha. “Gay person sets unknowing one straight.” And they say we’re out [no pun intended, truly] to convert people!)

When I was first diagnosed with cancer, I never envisioned reaching goals like these. Now, planning for my next milestone keeps me hopeful that leukemia is not going to take my life. No wonder cancer-related goals, however insignificant, have become so important to me.

Then, two days later, J. and I will leave for Israel. Who ever thought I’d get any doctor’s blessing to travel so far? Yet another cause for celebration. That and anticipation of the best hummus and falafel anywhere. I can almost taste it….

First, let’s get the Facebook page out of the way. To those of you who have kindly sent me Friend requests, I am not ignoring you; I am simply paralyzed by my ineptness. I learned the hard way that there is a difference between a Facebook account and a Facebook page, and had to shut my first attempts down. I will get back to you when I manage to sort my page out.

Now a question for those of you who have your paper delivered: did your newspaper arrive at your doorstep this morning? If it did not, I think I can explain. I received it. Ever since I left those stale banana chocolate chip muffins out for Mr. RAK, we have awoken to one or sometimes even two newspapers on our doorstep. I may have to rename Mr. RAK Mr. DAK (as in “Daily Acts of Kindness”) because he has been so generous with us.

You can imagine that I, who am prone to guilt in much lesser circumstances, am overwhelmed with this current situation. This man receives no financial compensation for his generosity toward us, and I genuinely believe he is not trying to encourage us to reinitiate our subscription. My gratitude is killing me.

Of course I keep a mental tally of the give and take in any relationship. If I feel I’m giving too much over time, either I try to address the inequity with the person directly (when I’m in a grown-up mood) or, if I’m feeling more child like, I withdraw from that person. According to my usual tally system, I’m always in the red. Always. So a situation like the one with Mr. DAK, where I’m getting a lot more than I’m giving, torments me.

I am trying to practice allowing someone–in this case, Mr. DAK, to be kind to me. But in order to rebalance things just a bit, as soon as I finish this post, I will be baking a batch of oatmeal cranberry cookies to leave for him tomorrow morning, when he will be dropping by with an extra newspaper for us. I give thanks to you, Mr. DAK.

I was discussing the newspaper situation with a neighbourhood friend who happens to pay for her daily paper delivery. She mentioned that every so often, maybe once a month, her newspaper does not arrive. As she was discussing this with me, she said, “Hey, wait a minute….” We agreed that maybe Mr. DAK, in a Robin-Hoodish manner, is stealing from the subscribers and giving to the nonsubscribers. So if you’re my neighbour and your newspaper doesn’t arrive, feel free to take ours. God knows we haven’t paid for it. Consider it your way of assuaging my guilt.

Happy Thanksgiving. May you all have much to be grateful for this weekend.

P.S. I’ve had a few enquiries about this year’s Light the Night Walk for Leukemia on Saturday, October 21. You are more than welcome to join us. The team name is Annie’s Anemic Leukemics, and the registration link is here. If you are interested in celebrating my fifth cancerversary with me, come on out. All the better if you’re an Olympic weightlifter: you can carry me over the finish line if I get too pooped to walk.

Our fall vacation is quickly approaching. We have planned a trip to a far away land, a place we’d talked about going years ago. Then leukemia happened. Leukemia is still happening, but I’m so darn healthy that, in the words of a wise Jewish scholar, “If not now, when?” A self-indulgent vacation is not what he meant; I’m interpreting his words to my own advantage.

There are so many things I, and we, have put off since I got cancer. I ran my old car into the ground before buying a new one. I quit working, only to resume at a leukemic pace. I stopped buying clothes since I didn’t know how long I’d have to wear them. And we’ve travelled with trepidation since I’m utterly uninsurable. Throwing vacation caution to the wind is long overdue, don’t you think?

In late October, we’ll be flying to the Land of Milk and Honey, also now known as the Land of Learned Hematologists. Why all the hematologists? Because we Jews are prone to blood disorders, and who better to study those disorders than Jewish doctors? Were I to get sick while I was there, I’d be in many very good hands. There is some comfort in that.

I lived in Israel my second year of university, but I was so studious that I saw little of the country. Since then, I’ve always wanted to return. Finally I have my chance. J. is not Jewish, but she too loves a freshly fried falafel and a flaky cheese bureka and a fatty sufganiyah. Did you know that in Israel, there are hummuserias that only sell variations on everyone’s favourite ground-chickpea concoction? Somehow I believe the hummus there will taste significantly better than the lame facsimile from the deli. We’ll visit museums and see archaeological sites and maybe even visit a kibbutz while we’re there, but I can’t wait to eat the great food I remember. No wonder Dr. Blood Lite gave us his blessing.

The timing of this vacation involved some negotiation, however. J.’s wedding frenzy ends after Thanksgiving weekend. She wanted to leave promptly thereafter, but I said, “Whoa baby! I can’t skip the annual leukemia walk! How will I get my five-year pin?!”

What event do you anticipate every year? Maybe it’s Christmas with family or the home improvement show or the local jazz festival. I look forward to the annual Light the Night Walk for Leukemia and Lymphoma, which takes place this year on Saturday, October 21. (Save the date.) Not only do I get to commune with like-blooded people, I am surrounded by my own special community of support (that’s you, dear friends).

We are indeed going to Israel, but before we leave, we’re going for a short evening walk. Swanky team costumes (okay, they’re from the dollar store) are available to anyone who’d like to join us. If past years are any indication, hamburgers and hot chocolate will be free, speeches will be moving, and yours truly will provide the baked goods. As in previous years, I will cry many times over the course of the evening. Feel free to join the viewing party.

What’s that you said? They must have named the Wailing Wall after me? I’m not laughing.

While everyone else was back-to-school shopping, I was back-to-size-8 shopping. I wanted a few clothes that fit my new body, however temporary, so I scoured every sale rack I could find. I didn’t buy much since this petiter me may be fleeting, but I was tired of looking schlumpy while my body sorted itself out.

No, I haven’t gained all that weight back. Rather, I’ve lost another kilo in recent weeks. No wonder I was nervous about yesterday’s appointment with Dr. Blood Lite. “I have been eating more,” I told him, “but not enough to gain weight.” Although I feared his wrath, he is too kind to be angry.

After discussed my leukemia, which seems to be stable, he asked whether I’d ever reviewed the progression of my liver disease with Dr. Foie Gras. Where did that question come from? I told Dr. BL that, no, Dr. Fois Gras and I had not discussed my liver’s prognosis, but likely because I had never asked.

As much as I want all the information I need about my various ailments, I don’t want it before I need it. I may not ask the questions but I still know what the potential outcomes are. I told Dr. BL, as I’ve told you, my faithful readers, that I can only think of one of my illnesses at a time or my anxiety overwhelms me. Mostly I pretend I only have leukemia and forget about all that other potentially deadly stuff.

For many years, I have been low on my liver doctors’ totem poles; the patients they focus are often in acute liver failure or have more aggressive liver diseases. They need liver transplants or they are dying. I was one of them once, about five years ago to be exact, but I’m not right now. I only think of myself as someone with liver disease when my liver is malfunctioning. I know what a failing liver looks like, but I choose not to ask for details.

I see Dr. Fois Gras every six months or so, he takes a closer look inside me once a year, and he reviews my blood work quarterly. My blood test results have never garnered a telephone call from his office. No news is supposed to be good news, right?

Usually my denially approach works, but it failed last night between 12:30 and 3:30 a.m. when I stared at my ceiling, listening to both J. and the dog snoring, and wondered if something was terribly wrong with my body and no one was telling me. Maybe Dr. BL was afraid to share his concerns after I’d put on my blinders in front of him. Or maybe he was being thorough since he didn’t know me all that well. It must be the latter.

If he were that concerned, he would have told us to cancel a trip we’ve planned, but he didn’t. He encouraged us to go even though it’s very far away. He even mentioned that our destination country is known for many well-respected hematologists.

You might wonder where we’re going, but that will have to wait for another post. First, I need a good nap.

Last week we went on the perfect cancerversary trip. I didn’t have to do anything but show up, we made use of every vacation minute to the fullest, we saw lots, ate well, and even had a beer on the patio (maybe that was J., but I enjoyed my teetotaller’s lemonade). Our frenetic pace unfortunately brought me back to leukemia reality: I have been napping daily since I got home.

I’ve had many years of practice now, and, not meaning to brag, I have an honorary Ph.D. in napping. In the past, I would often lay down, only to toss and turn and drag myself up a while later, not having slept but more tired and more frustrated than before. I can nap almost anytime, almost anywhere, and even if I know I only have a brief reprieve before I must again be up and at ’em. Despite my expertise, I do have several preconditions that bring my likelihood of napping success close to 100%.

The first necessity is absolute utter exhaustion. I have become a good judge of how tired I am at any particular time, even if I can’t rate my exhaustion on a 1-10 scale. If I can barely keep my eyes open, if one or more people tell me I look like a truck has run me over, if I can’t stop myself from yawning, I know I will fall asleep as soon as I allow myself to lay down.

Second, I need a very comfortable couch. It doesn’t have to be my couch, which is handy because it allows for some flexibility of napping location. (Warning: If you happen to have a comfortable couch, you may find me curled up on it when you least expect it.) “Why not a bed?” you ask. I can’t really explain that, except to confess I’m more likely to nap for too long if I allow myself the comfort of a pillow-top mattress.

Third, I need a blanket of some kind. If I am chilled, I will never be able to sleep. I need to be warm and cozy.

And last, I need background noise of some kind, preferably in the form of a trashy television show. Border Security was my show of choice for years, but being able to recite every oft-repeated episode by heart necessitated a change.

I have recently found a suitable substitute in Say Yes to the Dress. On this show, assuming you have never wasted your precious time watching (my time is far from precious), brides-to-be drag an entourage of family and friends to a fancy wedding dress store to choose their gown for their special day. There’s nothing like a roomful of people in utter disagreement about what a bride should wear. I’ve seen tears and anger and, sadly, meanness, and many brides leave without saying yes to a dress.

I have learned so much from this show, when I’ve been able to stay awake. Among other things, it has prepared me for a very special wedding I will be attending this evening. I’ll give you the complete rundown on Friday. Now I must nap, so I can be in good form for the celebration. I am so excited!!

Is today really my 5th Cancerversary? I know, I can’t believe it myself. 5 years ago today I found out I had cancer, then I almost died, but I didn’t. I’m alive, I’m alive, still!

Come to think of it, is today the actual date? It depends on how you define the term. Should I make it the day that the astute on-call hematologist told me she thought I had CML, or her confirmation later that week with results of a bone-marrow biopsy? I’ve chosen the latter as the date of note. By the date CML was confirmed, I had overcome my overwhelming denial and was ready to accept the reality.

I wish I could be celebrating, like many others do, the date that cancer was eradicated from my body, whether through surgery and/or radiation and/or chemotherapy, but I don’t have that kind of cancer. I am celebrating 5 years of living with (or should I say, “not dying from”) cancer, which is a whole lot better than the alternative. With the wisdom and guidance of my stellar medical team, I am still here. Sure, I’d prefer to be rid of my leukemia altogether, but that’s not the CML way. Technically I may be in a remission of sorts, but I am not cured and, as far as I know, I never will be.

Five whole years of leukemia and I’m not dead yet. It begs the question, have I been pulling your leg all these years? Do I really have cancer? Yes, the doctors tell me I do. Remember, I am not a writer of fiction.

This is how I know I still have cancer: I hang out with other cancerous folks every 6 weeks of late. This more frequent cancer-centre visit schedule reflects both Dr. Blood and Dr. Blood Lite’s concerns about my goutiness and my weight loss. I trust I will be on a less frequent cancer-reminder schedule sometime soon.

Have I convinced you that I do have cancer, even though it’s not killing me, or at least not yet? Whatever, I believe strongly that a milestone like this should be celebrated. It’s an accomplishment of sorts, even if I didn’t make it happen.

J. asked me how I wanted to celebrate the day and, after giving me approximately 30 seconds to deliberate, she booked us a quick trip away. And today, when I have coffee with a few dear friends I don’t see often enough, I may order a small hot chocolate, but only to get my doctors off my back. Or maybe I won’t. I’m lactose intolerant.

I also celebrated by wearing my leukemia shirt to the gym. It subtly screams SURVIVOR on the back. A fellow yogi with whom I’ve exchanged pleasantries in the past asked me what kind of survivor I am, so I told her with undeserved pride. I think she was disappointed that I had not won that Survivor television show. Imagine me on a desert island fighting for my life. What if there’s no pharmacy? No blood lab? I’d be sunk.

Tonight I’ll be raising a glass of fizzy fruity soda from a fake champagne bottle. Don’t let that stop you from imbibing something stronger or, alternatively, eating cake. Together let’s toast 5 years of still living. L’chaim!

You may wonder who this Dr. Blood Lite is, and how I named him without consulting you first, my dear readers. This time I didn’t need your help, thanks to a comment on a previous doctor-naming post. In that comment, a beloved beer connoisseur, who would never imbibe the beer of the masses, came up with this perfect name.

If you haven’t yet put one and one together, Dr. Blood Lite is Dr. Blood’s locum for her sabbatical. He is a lovely young doctor and, since he’s been trained by Dr. Blood, I know he’s learned from the best. Dr. Blood had told us she had considered her replacement carefully, and she hit the jackpot. Dr. B.L. seems calm and kind and he even introduced himself using his first name. You know how I like to be on a first-name basis with my physicians. It gives me a false sense of collegiality.

Although I did not recognize the newbie, we had met once before when I was an inpatient on the hospital’s palliative unit. Do you recall that hospital stay, the one where the hematology unit was full so I ended up lodging with the dying people? I could not remember him but J. clearly recalled Dr. B.L.’s Edmonton Oilers lanyard. In fact, I envision her hijacking my future appointments to talk about McJesus. That Dr. B.L. could remember our brief encounter is a miracle on par with McJesus’s MVP performance last year.

Back to my health for a moment. Dr. B.L. told me that, if my blood work is to be believed, I am holding steady on all fronts. This is good news. There are no significant changes since last visit, which means I will stay on my current treatment plan.

My blood work did not explain my appetite loss, which was a relief. I had pretended I wasn’t worried about my disinterest in food, but I was lying, as you probably suspected. I may have a perfectly reasonable medication-related explanation for the pounds melting off me, but as a graduate of the School of Something Could Always Be Seriously Wrong, I’ve still wondered whether my liver might be tanking. As of today, I worry no more. My liver is a-okay.

Despite my apparent well-being, Dr. B.L. was alarmed by my rapid weight loss. So alarmed, in fact, that he said something that no doctor has ever said to me before: he told me to start eating more. He forbid me from losing any more weight and said he expects me to pack on a few pounds by the next time I see him. He even suggested ways I might increase my caloric intake.

My inside voice could not help but giggle in response to Dr. B.L.’s concern. I wanted to say, “Do you realize who you are talking to? I am a glutton! Cookie Monster is my doppelganger. Or is it Miss Piggy? Whatever, you’ve got me all wrong, doc.” Instead, I listened respectfully and told the doctor I would take his concerns under advisement. Yes, I used those words. And he smiled, just a little. I think we’re going to get along.